#familialpolyposis

[lifesapolyp]

Posted @withregram • @jennie.lynn_ On today’s episode, I talk to an incredible rare disease warrior named Jenny. ⭐️ Jenny has not 1 but 2 rare diseases! FAP and Short bowel syndrome. If your curious to know more about these rare conditions you’ll want to catch tomorrow’s episode! It goes LIVE 6am EST! 🎤 Jenny is now raising awareness for these diseases. ⭐️ Check out her IG page to donate or purchase her Childrens book or 10th Anniversary gear to help donate to this amazing cause. 💜 ➡️ Don’t forget to Subscribe, Rate and Review to help these messages be seen by more people. The more that see it, the more we can help! 💜 . . . . . . . @lifesapolyp #rarediseases #rarediseaseawareness #chronicillness #chronicpain #chronicfatigue #support #life #123momsquad #igotthis #raredisease #shortbowelsyndrome #family #mom #momlife #familialadenomatouspolyposis #familialpolyposis #podcast 💜 https://www.instagram.com/p/CdL0G1wO3Ge/?igshid=NGJjMDIxMWI=

[lifesapolyp]

Check out this episode I was featured on!

Short Bowel Syndrome

Jenny was diagnosed as a child with the rare diseases Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. She lived with an ileostomy for 6 years before having it reversed into a straight pull thru. In her spare time, Jenny shares about life with rare disease on Life’s a Polyp blog and Youtube channel. She raises funds for NORD FAP Research Fund through Life’s a Polyp Shop and is writing a children’s book about FAP. Jenny graduated with a Master’s of Social Work and works with individuals with chronic illness.

Short bowel syndrome is a group of problems related to poor absorption of nutrients. Short bowel syndrome typically occurs in people who have

had at least half of their small intestine removed and sometimes all or part of their large intestine removed

significant damage of the small intestine

poor motility, or movement, inside the intestines

Short bowel syndrome may be mild, moderate, or severe, depending on how well the small intestine is working.

People with short bowel syndrome cannot absorb enough water, vitamins, minerals, protein, fat, calories, and other nutrients from food. What nutrients the small intestine has trouble absorbing depends on which section of the small intestine has been damaged or removed. (Credits NIH)

Check out this episode!

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original url http://www.geocities.com/familialpolyposis/ last modified 2003-11-02 21:53:52

[jessica-marie90-blog]

Just came back from another trip, but this time I went camping. It went really well aside from my first major leak. The side of my flange blew out because I didn’t wake up in the night to empty.. and my output was watery so it soaked my pj pants, hoodie and a towel. It was pretty embarrassing… But I cleaned myself up with tears in my eyes and got on with the day. At least I managed to save my brand new sleeping bag.  I head back to work today. I’m really nervous about it. I’m sure it will be fine but I always get anxiety about going back after being gone for a while… and I’ve been off for 10 weeks. Update later on how it went. 

[lifesapolyp]

Posted @withregram • @wegohealth If you’re fighting to raise awareness for those with rare diseases, connect with patient leaders like Jenny - @lifesapolyp. After being diagnosed with Familial Adenomatous Polyposis at a young age, she endured numerous surgeries, medical PTSD, and life-threatening medical experiences that gave her the purpose to become a patient advocate. Jenny says: “I realized that I didn’t want others with chronic illness to have the same experiences I have had and instead, would do what I could to help educate and empower others with their own illnesses.” To educate and support others, Jenny started her blog, and has since expanded her advocacy through collaboration with various organizations such as NORD. Today, she’s working on her first children’s book which will be published on Rare Disease Day in 2022. Leave a like to show your support for Jenny’s work in the rare community. #WEGOHealth #PatientLeader #chronicillness #chronicillnesswarrior #chronicillnesses #chronicillnessawareness #chronicillnessfighter #chronicillnesssucks #chronicillnessblogger #chronicillnesslife #chronicillnessart #chronicillnesscommunity #chronicillnesswarriors #familialadenomatouspolyposis #familialpolyposis #shortbowelsyndrome #raredisease #lifesapolyp 
https://www.instagram.com/p/CYuV2VNPtnH/?utm_medium=tumblr

[lifesapolyp]

I thoroughly enjoyed getting to talk to The Bearded Advocate about life with the rare disease Familial Adenomatous Polyposis and how that’s affected me physically and emotionally.

[lifesapolyp]

Want to join FAP groups on Facebook? I’ve collected the most active ones I’ve found so all you have to do is click to join them.

https://www.lifesapolyp.com/p/fap-facebook-groups.html

[jessica-marie90-blog]

Made my own bag cover. Quite impressed. Helps me deal with it a little bit better.